Biobanks never operate in isolation - it’s impossible. They need a strong support system to function that includes the public, patients, scientists, healthcare workers, investors, government, healthcare providers, regulators, ethicists and so forth. Biobanks’ purpose is to collect, process, store and distribute biological material and related data. These materials and data are then brought to research organizations to be examined. They are used by scientists and researchers to learn more about human diseases, causes and effects, developing better prevention measures, diagnostic tests and therapies. Biobanking operators, such as research institutes, pharmaceutical companies, hospitals and patient organizations interpret their own biobanking activities differently.
The role of patients in biobanking is continuously changing. Patients are going from being seen simply as donors to actual collaborators in the design, development and operating of biobanks. Most health research would not be able to occur without the passive and active involvement of patients. In the past, patients have been passively involved as subjects in research, with patients and their representative organizations rarely seen as partners in research practices. The primary objective for their involvement in biobanking is to find the cause of their own disease, improve treatment options or the ability to diagnose. When looked at over the last 20 years, this range of involvement has evolved through a number of important, overlapping phases. The phases are:
1. Emergence of Patient-Led Biobanks
The emergence of patient-led biobanks began only recently. Unsatisfied with the speed of research, patients and patient organizations established their own biobank to enable them to provide a greater contribution and influence on research in their disease field.
2. Establishing the Patient position on Biobanks
Many European-wide initiatives have been able to develop “representative” patient positions in biobanking.
3. Capturing Patient and Public Perspectives and Concerns
Biobanks create multiple ethical and legal issues related to research governance, informed consent, privacy, control and ownership, commercialization, withdrawal of samples, return of results and incidental findings. The findings have shown that the public response to biobanking activities is varied and diffuse. Despite widely positive responses towards biobank participation, the concerns expressed by patients and the public as participants in biobanking involve a few points:
● the confidentiality of the tissue and of data being compromised
● the nature of consent when agreeing to participate
● access to the tissue and data after donation
● their access rights to results from research performed using their tissue and data
● how their information might be used
4. Training and Education
In order to ensure the development of biobanks and to maximize their potential, it is essential that researchers and others associated with biobanking have access to the best training and career development tools at all stages of their career. In order to accommodate active participation of patients and organizations in biobanking, appropriate training in partnership with healthcare professionals and researchers is necessary. More information should be disseminated as to how patients can concretely contribute to research rooted in biobanking.